Tuesday, July 26, 2011

I changed the name I use for my daughter in order to avoid using her proper name but I'm considering changing back. While I've always called her "babygirl" something tells me that when she gets older she's not going to like being called "baby" here. Weighing the pros and cons.

Monday, July 25, 2011

H. Peter Chase, MD is the past Executive and Clinical Director of the Barbara Davis Center for Childhood Diabetes in Denver, CO. In addition, he is a Professor of Pediatrics at the University of Colorado Health Sciences Center in Aurora, CO. Dr. Chase received his education at the University of Wisconsin in Madison, WI. He completed his internship and residency at the University of Utah and Stanford University. A fellowship in Endocrinology and metabolism was followed by research at the National Institute of Health. He has since been a faculty member of the University of Colorado. He is a principal investigator in the multi-center NIH - funded studies of Diabetes Research in Children Network (DIRECNET) and the Type 1 Diabetes / TrialNet prevention studies. Dr. Chase has received many honors, including the Outstanding Physician Clinician in Diabetes award from the American Diabetes Association, a Lifetime Achievement Award from from JDRF and the Ross Award for Outsanding Research in Pediatrics. He has authored over 200 research papers and 50 textbook chapters.

Sunday, July 24, 2011

Her RG was 141 an hour after a banana and half a stick of cheese and her A1C was 5.6 up .3 from three months ago and continuing the trend up. It doesn't take a rocket scientist to recognize the pattern. It will be another 4 weeks before we get the test results. She was her usual champ self during the blood draw. Didn't even have a tech hold her arm down. Did it all on her own. The researcher laughed and said the stress test data was going to be useless with her because there was obviously no stress.

So afterwards we just came home for a bit. Tried to get the kid to eat lunch (all she ate was some baby carrots) while I spend a little time online and took a nap. Then off to some friends for a BBQ. The family we met over the 4th of July invited us to their place for a housewarming/birthday party. Baby played and played and played. I got a couple bites of food in her by calling her over and making her try something from my plate but otherwise notta. Except for the s'more later after dark when they started up the fire. Her first! She had such fun playing with all the kids. Didn't get home until well after midnight and the heat kept us from sleeping in much so I'm thinking we will both be going down for naps in a bit.

I met lots of nice people. One was a lady who is a T1. Turns out both her kids are in TEDDY but have been clear so far. She was dx'd at 11 and until she got her pump she wasn't expected to make it past 20. She's now 31. So she's in love with her pump. We talked about different brands and let me in on something. Seems the Medtronic, besides it's continuous glucose monitoring (CGM) is creating an app for smart phones to text alerts for lows (or highs) so that Mom or Dad can adjust programming WHILE AT WORK or away from the child. That would be so cool! It's kinda funny how in the last 2 weeks I've met two other TEDDY families. Okay one. The first family, the one's having the BBQ, found out that their daughter had the gene but their ped talked them out of joining the study. She's wishing she hadn't listened now.

Friday, July 22, 2011

First thing in the morning I have to give her a saliva test. Before eating or drinking within half an hour of waking.

Then just before leaving I have to put the EMLA cream on her arms. Usually they do it once we get there but this time they want to do another saliva test as soon as we get there, do the blood draw and then 20 minutes later do another saliva test. They are testing stress levels. While waiting to do the last saliva test (and the RG and A1C) we'll do the usual measurements and go over the paperwork we usually work through waiting for the cream to work. This time it will be the diet record, the behavior checklist and the usual questions.

Sunday, July 17, 2011

It's time for the 3 day Diet Record. That means beginning today (and for the next 2 days) I have to record everything Baby eats or drinks. Down to how it was prepared and all the ingredients. Keeping labels are my best friend.

There are many pains to this as she is not guaranteed to eat everything on her plate in a reasonable time. It took her 2.5 hours to eat her dinner the other night. She's a nibbler. The other problem is that she'll head upstairs to "bug" Grandma and eat (or drink) up there without me knowing until later.

The positive? Well I figure if she DOES develop D then it will be something I will have experience doing when it comes to insulin and carb counting.

About Us

I'm a single mother with a 4 year old girl, Superhero Baby. Her name for herself. She can do anything. The problem? Her "father" is a Type 1 Diabetic and she has the gene. She's part of a study, so we know she is positive for all 3 antibodies. We've been told it's not "if" but "when". Odds greater then 50% that it will be within the next 4 years.
There is no support group for those standing on the edge of the cliff.
So I research and research and take my daughter in for her ogtts every 6 months, her antibody tests every 3 months and test her bg at home a couple times a week and hope.